Saturday, August 19, 2006
First Days at TCH - MEDICAL UPDATE
Since we have been here, they have taken blood cultures, urine analyses, done an EEG, MRI, and sent off for more genetics testing and metabolic panels. A lot of this is re-testing, but for their own satisfaction, they want to see newer results. We have an entire neurological TEAM working on our case. TX Children’s is a teaching hospital, so we have pediatricians, resident assistants, and fellows all seeking further accreditation in neurology working as a team on Braden’s case – not to mention a renowned neurologist.
Braden has suffered a few side affects from his seizure medicines, and his stint in the hospital. The ACTH has made him hypertensive (high blood pressure), and the sedation keeping him still has caused some puffiness & swelling – making him look like a little Michelen Tire baby. So they are giving him some counteractive medication, and a nutritionist is reviewing his caloric intake and it may have to be adjusted some. They are trying a higher dose of ACTH, and if they see no further improvement in his seizure activity, we will stop that therapy soon. They have decided to take him off the topimax, as it has given our poor baby renal (kidney) stones and calcium deposits. They are putting him on a replacement drug that will be less harsh on that system, as he has good blood flow to the kidney area, meaning there is no other cause for the high blood pressure. The medicine they are giving for the swelling should also lower his blood pressure.
Tonight we are having Braden baptized by a local Lutheran Pastor… so if you want to pray with us and be there in spirit, we are doing it at 8:30 pm. Please keep praying for Braden’s recovery, and know that he is in the best place possible. As many of you have asked how you can specifically help, we are working on a few ideas, and will try to post something in a day or two about how you can help from far away. We appreciate the offers to come be with us, but as this is a very stressful time, Brad and I are leaning on each other right now – and in a city we don’t know, it would put more stress on us to feel obliged to take care of anyone other than ourselves… but know that it means SO MUCH to us that some of you have offered, and that we may take you up on that at a later date.
Check back soon – we will update every few days as we can! Peace and love…
Kodi, Brad, & Braden